March on Washington

From left: Roger Brechner, SF Chapter and Support Group Manager, Carol Feghali-Bostwick, SF Board Member, and Frannie Waldron, SF CEO

Members and staff from the Scleroderma Foundation traveled to Washington, D.C. this week to meet with elected and appointed federal officials to advocate the need for increased federal funding for scleroderma.

The visit kicked off when Foundation CEO Frannie Waldron and Foundation board member and researcher Dr. Carol Feghali-Bostwick attended a meeting of National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). The coalition, which attracted more than 80 representatives from many health organizations, touched on subjects including collaborative partnerships, research, and updates on NIAMS. The day-long event also provided Waldron and Feghali-Bostwick the opportunity to network with colleagues.

Later that evening, Stephen Katz, M.D., Ph.D, the director of NIAMS, held an exclusive, 75-minute meeting with the Foundation, an event Foundation board member Cindy Nolen called “phenomenal.”

“He was very giving of his time, down to earth, and he genuinely cared what we had to say,” Nolen said.

The next day staff and members of the Foundation’s Advocacy Committee met with Congressional staff from the states of California, Illinois, Missouri, Iowa, Wisconsin, New York, New Hampshire, Massachusetts, and Pennsylvania. During these meetings, committee members and staff were given the chance to stress the importance of increased funding for scleroderma research in the National Institutes of Health budget. (NIAMS is a part of NIH). Raising awareness of scleroderma and the struggle researchers face in gaining funding were key points made during the visits.

“The goal of these meetings was to express our legislative priorities, keep ourselves in front of these legislative staffers, and hopefully we may have a larger Capitol Hill Day,” said Nolen who is a person living with scleroderma.